More than five million Americans suffer from Dementia. My mom was one of them. A site for young adult caregivers struggling and coping with "the long goodbye." Created in 2007. Ended in 2014. Stay tuned for my new project about life after dementia, called "The Recovering Caregiver."

When There’s Nothing You Can Do… You Let Go

The running joke about me is that I see the glass as half empty………… The reason I choose to view most every situation from this angle is to avoid disappointment. It’s a method that’s served me well………….. especially when it comes to my family.

Of course, I would never describe myself as a pessimist. That’s just tragic.

I’m more of a realistic. Because the reality is…………………………

My mom is currently being “stabilized” with psychotropic drugs. After we were told that she had to leave her home, I begged my dream nursing home to consider accepting her…. they had a reputation for taking tough cases………if you’ve read this blog, you know my mother is challenging………………. dream nursing home decided to send out a nurse to further their evaluation. I was feeling optimistic. I thought, maybe this is an early birthday present……………………. Not five minutes after meeting my mother, the nurse told me that she needed to be in a lock down facility where she could be stabilized……… and they only way to get her to said facility would be to call 911.

Ten hours after 911 pulled up and carted my mom away, we found a bed at a unit that works to “stabilize” people like my mom. That’s the thing with difficult dementia patients……….. most nursing homes won’t accept them if they are yellers (it disrupts other residents), combative (apparently, not an attractive quality) or aggressive (no one appreciates a black eye). My mother is a yeller. And she is quote-unquote combative. Not my word……………. and sorry, if a stranger were wiping your ass, I think you’d behave “combatively,” ………… as for the aggression part, well, it wasn’t her. Unfortunately, yelling has unintended consequences……………… like pissing off other dementia patients — a resident at the last home wanted to punch her to shut her up………… sigh.

Now here we are, waiting for her to “stabilize.”

And then we look for a permanent facility.

The more challenging dementia cases, usually end up at places that can deal with behaviors…………….. Unfortunately, there are very few “behavioral” facilities, and the ones that have a good reputation also have no beds. We are currently on a waiting list for one……………………

Think about that for a moment. My mom is on a waiting list for a bed at a facility that has limited space………… So, in order for a bed to open up, one of three things has to happen:

1. Someone has to be cured of dementia.

2. Someone has to be transfered to another facility.

3. Someone has to die.

We are waiting for someone to die. Preferably a female.

Glass nearly empty.

That’s our reality.

Dementia is a grotesque disease. And when you peel back every grotesque layer, what’s left is a putrid, rotten pit……………. or, reality.

The reality is, I have very few choices.

The reality is, there is very little-to-nothing I can do.

The reality is, I cannot save my mom.

The reality is, I have done everything I can do.

The reality is, I have to let her go.

The reality is, I have lost.

The reality is, I am accepting all of the above.**

** Somedays, reality is a tougher pill to swallow than others.

Nothing has ever been easy about this disease, her disease………………. the price we’ve paid as a family, well, there’s no coming back from it. In many ways, I’ve lost both parents………….. one to the disease; the other to her disease. Her disease has made us more grotesque…………………. her demise is a staggering loss, heartbreaking, devastating. When I sit back and think about what the disease has done, where it has taken us, how its nefarious tentacles has slowly suffocated us……………….it’s still suffocating us……………. it’s a curious thing how something can infiltrate and devastate the family unit to the point where there is no point, no coming back.

No happy ending.

Grieving for the living is a strange thing……………… Closure comes in the form of accepting what is…………….. I think.

17 comments

What a tremendously emotional journey you must be dealing with. I cannot imagine. My own mother does not have behavorial issues but dementia does have a hold on her. I have been reading an excellent book, “Dementia Beyond Drugs – Changing the Culture of Care” by G. Allen Power, M.D. ISBN# 978-1-932529-56-2 which received 2010 book of the year award from (Psychiatric-Mental Health Nursing) American Journal of Nursing.

The book reveals what it takes to effect real culture change within residential care settings while reducing the administration of unnecessary psychotropic drugs. It states that a large proportion of these so-called behavior problems stem from incongruence between the needs of the people who suffer from dementia and the degree to which their environment fulfills those needs.

I understand not all cases are equal but the reading does provide helpful information as an understanding of how to deal with dementia as it progresses for a loved one or a resident. Many times these individuals with dementia are indicating they have needs that are not being met and instead of trying to meet them at their level of some understanding, institutions finds it much easier to medicate. It’s the quickest fix. By reading this book I have found numerous ways to better see things from the dementia state as well as ways to interact with it in a positive way. Some days thats all you can hope to accomplish is some sort of small connection with your demented loved one.

What you are having to experience by “letting your mother go” as you say is more than painful. Beyond description. However, I disagree that you “have lost” in your list of things you have to accept. As hard as it is to see you have won many battles along the way that you can be proud of. Thank you for your continued writing by sharing your journey via this blog.

[…] If you’re reading this blog because you have a parent dying from Frontotemporal dementia, I have bad news: things are going to get worse. That is a fact. No point in sugar coating the truth, right? There is no happy ending, no light at the end of the tunnel (unless you accept death as light), no hope, and no cure. Nothing………………………… says the glass-half-empty-girl. […]

I stumbled across your blog when I googled “nursing homes wont take my mother”. I truly feel for you & word for word your story is mine. I cannot believe how cruel this whole situation is to everyone involve… at the end of my rope I fell euthanasia should be an option. I know that sounds harsh and cruel… but I feel it would be humane. All my mother is, at.this point, is $11k mo income to a facility. She is suffering with frontotemporal dementia and it is killing us all. I am an only child, divorced, and ready to give up!

I am so sorry to hear that you’re going through this… it’s awful. The nursing home situation is devastating. I assume she has some behavior that they won’t tolerate. My thoughts are to see if you can find a behavioral facility; have you checked out the association for frontotemporal dementia? http://www.theaftd.org/
call them; they might be able to help you with facility advice; also, contact banner alzheimer’s in phoenix and talk to Geri Hall. she is a pro when it comes to FTD and can possibly help you with behaviors/issues.

Again, I am so sorry. Don’t give up. you will get through this. you are in the thick of it, but it does get easier. eventually.

We too had to get on a waiting list, and I felt awful wishing for there to be an opening since I knew what had to hapen for one to open up. Now though, there are about 2 openings. I think it’s because they went up on the cost, and some just can’t afford it. We are cheap compared to your other writers who say $17,000 and $11,000 a month. Here in Amarillo, Texas, is $210 a day or about $6,700 a month, not counting the add-ons, like beauty shoppe, oxygen, etc.

You are a better woman than i. I love my mother so much but havent talked to her or my father in a year. Mentally I cant take the change. You described my broken heart. I have two small babies i am trying to be a good mom but i am a horrid cowardly daughter. Bless you.

[…] Where were you when she was held in a lockdown psychiatric unit? Do you have any idea what it’s like for a daughter to find her own mother covered in her own feces? Do you have any idea what it’s like to watch your mother pound on the glass, screaming to go outside? You moved on. You forgot about her. […]

Tonight I watched my m punch and bite a nurse. She is never there anymore. And my sister is claiming she’s this sweet person. Has never spent more than 1.5hrs with her. This person is not my mother. I wish i would not habe come to see her. Last time.we visited, she greeted me by saying “my beautiful baby girl” and cried when I left saying “I’m going to miss you”. Now she doesn’t recognize me and has hurt several nurses on the ward she was transferred to when deemed not appropriate for a facility. This is not my mom. I have to let her go, and remember her for who she used to be.

My heart hurts for you. Reading what is happening to you, to your mom, your family makes me sad, and frightens me. I understand only a little bit the wretchedness of your situation. I found this because I Googled nursing home won’t take sister dementia aggression. The nursing home won’t take my sister because she is “too high functioning”, but last night she was so aggressive towards me I went to bed with a chair against the door because I was afraid. I just woke up from a nightmare about it. I feel sick inside, and depressed. This is horrible for all of us. I’m just so sorry this is happening to you and your family. It’s living in the Twilight Zone.

I have a stepdaughter that was in an accident and is a traumatic brain injury she was thrown out of her mom’s house for being violent and destroying things in the home she’s getting worse with every day that goes by she’s been with us for 3 years we also are raising a granddaughter that is 9 now we endure daily violence and the things that come out of her mouth are hurtful hateful and I don’t know how much longer I can do this we have very little pleasure or enjoyment of our lives because of her we endure death threats cursing screaming physical and mental abuse from her if she’s awake it’s non-stop torture it’s not fair to us or her and u give up hope when their own family will not help you with a day or even an hour break from the stress it’s become so bad I’m considering leaving the people that I love more than life .I don’t have friends anymore because they can’t deal with the behavior from her no one to talk to and becoming depressed what do you do when you’ve reached your limit.

I hear stories about people dying in their 60s~70s after short illnesses.

I envy those families that got a bitter-sweet goodbye and then proper mourning someone who had died.

With dementia we “live longer” but in many cases we’re so diminished it seems less like life and more like stretching it thin, just enduring beyond. Our lives end and we somehow remain.

With dementia it goes to it’s greatest extent of a cruel joke. People are “alive” but them, themselves, their personalities, their soul has long left. The closest thing in the real world to actual zombies. They are animated but they don’t live. Who they were passed somewhere between diagnosis and the present.
The living dead.

Life might have been hard in so many ways in the past, but at least the elderly could die with something akin to dignity while they still had their wits about them. Before they became shrivelled husks who soil themselves, who scream in madness, who can’t even make sense of the most basic of things they learned when they were toddlers. Who speak to themselves, speak to ghosts and hallucinations, if they can even speak actual words.
But they’re the ghosts.

And the truth is they ARE a burden. Love works that way. They were burdened with as as children, clothing, feeding, cleaning us. But at least they got the joy of seeing a human being blossom from their efforts, their toils. Dementia is a vindictive mockery of that. We watch them decline, never to climb back. They rot away and yet they endure, yet they “live”. We get the burden, we feel the love, but there is no reward.

So I hear stories of people who died after short illnesses with some dignity. I wish my mum could join them.

Thank you for writing this. I am dealing with my mom who has alzheimer’s who recently got kicked out of her residential facility, I was lucky enough to get her into a wonderful place but unfortunately my mom is very healthy and mobile, so 45 minutes after we left the staff met and decided that she needed to be moved to a locked unit. She had the wander guard on, didn’t try to get out, was just walking around a lot – probably trying to find her room. So basically, they don’t want these people to be mobile. I feel so defeated right now and have to accept this is where she will be. Good luck to you, I totally understand the battle.

I stumbled across this researching what to do for a person with dementia who needs to be stabilized with medicine. We are going through this with my Mom. The local geriatric psychiatric inpatient unit would not take my Mom. She has been to the ER and they send her back to her facility that doesn’t want her. They want her stabilized but we dont’ know where to do that because we bounce around and no one helps. Medicines are hard because now the is refusing them by mouth on occasion. I’m heartbroken, overwhelmed, and don’t know where to turn.